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Reconsidering Dynamic Consent in Biobanking Ethical and Political Consequences of Transforming Research Participants into ICT Users
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2019 (English)In: IEEE technology & society magazine, ISSN 0278-0097, E-ISSN 1937-416X, Vol. 38, no 2, p. 62-70Article in journal (Refereed) Published
Abstract [en]

Biobanks are not new. However, the scope of their application is growing, especially in genomics. Biobanks are also currently being reorganized to enable more genomic samples to be made available for different types of studies. Some future uses of the biobanks cannot be anticipated.

These developments conflict with requirements for provision of informed consent at the moment of recruitment for studies. A procedure known as Dynamic Consent (DC) has thus been proposed that, based on information and communication technologies (ICT), should allow participants to consent in real time to projects in which their samples and data may be of interest.

In addition, DC would empower participants through ongoing access to information and communication and direct consultation. As such, DC aligns itself with other ICT projects in claiming to be a democratic tool. We critique these claims and highlight their adverse impacts in order to examine the ethical and political consequences of transforming research participants into ICT users.

Place, publisher, year, edition, pages
2019. Vol. 38, no 2, p. 62-70
National Category
Computer Sciences
Identifiers
URN: urn:nbn:se:uu:diva-389616DOI: 10.1109/MTS.2019.2913072ISI: 000471102600013OAI: oai:DiVA.org:uu-389616DiVA, id: diva2:1338288
Available from: 2019-07-22 Created: 2019-07-22 Last updated: 2019-07-22Bibliographically approved

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Soulier, Alexandra

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